Carlamuses

Thursday, June 10, 2010

Hi Muselings, this is Carla's son, Maclen, and, by popular demand, my final post on this blog will be the eulogy that I delivered for Carla at her Memorial.

____________________________

Carla Zilber-Smith was my mom, but she was also my best friend. My hero. My creative collaborator of choice. My confidant, advisor, supporter, travel buddy. If she was “like a mother” to scores of individuals, she was more than a mother to me.

When Carla was diagnosed with ALS, on December 26th, 2007, I was brought to my knees. Serene as always, she held me as I wept for a dozen hour-long minutes. She gave the emotional moment its due and then said, “Now, you know what I want to do while I can still walk? Go boogie boarding in Zijuatanejo.”

We ended up going to a small town called Sayulita, because it had better waves for boogie-boarding. When we got in the water, it was apparent that she could no longer swim. You know what Carla did? She laughed. And we laughed at the waves, we laughed at the world, and we laughed at the ridiculousness of it all.

On the last day of Carla’s life, still indefatigable, despite having not eaten for three weeks, she said “this has been the funnest death day ever.”

On that day, I read her a piece that I had written for her a year after her diagnosis, and she said, “have I really been dying for that long? I’m a slowpoke.” Deathbed humor, literally.

In that piece, I asked how can one sum up the life of somebody who squeezed 80 years of happiness and 80 years of pain into 47 years. Carla Zilbersmith as not a professor, a singer, a blogger, an actress, a director, a writer, a comic, or a dying woman, she was a bard. A professional human being. She was what a renaissance man would be like if they had a sense of style and didn’t wear those silly tights. She was a method actress, playing the roll of Carla Zilbersmith to a T. People often want to know what they can do for her, for me, and the answer is to take that vacation you’ve been thinking about. Enjoy yourself in her honor. Go on a hot air balloon ride, or go skydiving. Go to the library, pick out a random recipe from a random cookbook, and cook it for a randomly chosen friend. Live the shit out of your life. That’s what it’s for, isn’t it?

Why would a woman like this get a disease like this? Random fucking chance. But this is not a tragedy. Tragic, is what you call somebody who lives to 60...70...80...90 and never for a DAY lives the way that Carla lived nearly every day of her life. Tragic, is those of you who let this event stop YOU from living the way Carla lived every day of her life. Tragic, is the fact that, the less Carla Zilbersmiths there are in the world, the less people are going to be called on their shit, the less people are going to be changed, and the less people are going to learn to really live their life. The odds are that Carla isn't the only one here who isn't going to reach fifty. Sound depressing? Well, it shouldn't be. We need to start playing by our own rules, the way my mom did for 47 hilarious and tearful years, because we shouldn't need a crisis like this to trigger us to live our lives, nor should we need a human being such as Carla Zilbersmith to trigger us to live our lives. So let's keep living it, let's keep living it, really living it. The help that Carla and I have received from her legions of friends has done nothing short of reaffirming my faith in the human condition, but do you want to know what Carla really wants you to do? Use humor to take arms against the slings and arrows of outrageous fortune. When it rains, think dry skies, and when it’s gray, think bright lights. When there’s pain, just smile, smile. Find happiness on even the worst day. Find love wherever the hell you can, because there’s nothing else any of us can do. If life gives you lemons, say, “hey life, give me some sugar, water, and vodka, I’m gonna make some party lemonade.”

I love my mom, and I’m crushed that my time with her has come to a close, but I am grateful that she is free of her suffering now. I am grateful that she lives on in albums of beautiful music. Not just those that she wrote, but those that were meaningful to her. Vita Brevis, Ars Longa.I am grateful that she lives on in two books worth of blog posts, which will someday give my future children an idea of the type of advice their grandmother would have given them. I am more than grateful that she will live on in the memories of those who she touched, those she made laugh, and the scores of people who she doesn’t even know whose lives have been changed by her writings, her songs, her teaching, her advice, or her life story. And I hope, more than anything, that she lives on through a conscious effort by each and every one of you to push the boundaries of what you’re comfortable with. To do something wacky and creative that you’ve always wanted to try. Even just to make an inappropriate joke because it’s fucking worth it.

I have worn two personalized wristbands on account of Carla, and I think they show the two sides of her philosophical coin. This one says “Ad Astra Per Aspera,” “through the thorns to the stars.” It means that you should strive to do what you want to do even in the face of difficulties placed in your path. The other wristband, which I don’t have with me, says “Give up.” It was an ironic parody Carla created of inspirational wristbands, like “Livestrong,” but I think it also had a powerful message. The first noble truth in Buddhism is that there is suffering. I believe that “Give Up” simply acknowledges that we aren’t going to be able to avoid the painful part of life. In conjunction, Carla’s philosophies of “Give Up” and “Ad Astra Per Aspera” say that life is going to happen to you, but that doesn’t mean that you can’t happen to life.

Thank you all for everything.

_____________________

And that's all, folks. I hope you have enjoyed the wonderful and sometimes tearful ride that this blog has been. If you haven't gotten enough of it, the Documentary based on this blog, "Leave Them Laughing," directed by Oscar-Winning Director John Zaritsky, is making the rounds at festivals as we speak. Additionally, there may in the future be a book in the works about Carla, so you may hear more about that in the future.

Tuesday, June 01, 2010

Carla Zilbersmith, born December 15, 1962, died May 17th, 2010. Carla Zilbersmith died in her home of Lou Gherig's disease, also known as ALS. Carla Zilbersmith was mother to Maclen Zilber, her only son...that she knows of. She was also daughter to Jack and Velma, sister to Jason and Stephen. Friend to an amazing group of caring, creative and competent friends, and lover to several very lucky and largely undeserving men. Although ALS is a fatal and incurable illness, Carla never gave up hope that one day her death would be surrounded by a cloud of controversy and speculation. Her final words, spoken through a clenched jaw were "oil can."

Dear Friends and Fans of Carla,We regret that due to the size of the venue, Carla's memorial will be private. We understand the love and admiration she inspired and welcome everyone to share their favorite funny memories of her here, and encourage you to create your own memorials with the friends in your circle. Memorial gifts are welcome to a variety of places.

Wednesday, May 12, 2010

It’s one in the morning. She’s screaming in pain. It takes a lot of pain to make her shout, you see. She can barely talk at quarter-volume most of the time, and her default pain level, as she will say later in the day, is a 7.5 out of ten. She has a high hurts to hertz ratio. This is a ten.

“My arm is all fucked up,” she weeps, her face a cacophony of agony. I am assured by her nighttime caregiver, Alexa, that all is well, and that I can go back to sleep. Alexa moves her bed into Carla’s room. I go back to sleep.

There’s a knock on the door.

Carla wants to see you.

What time is it?

Six AM.

I don’t hesitate. Well, that’s not true, I do hesitate. A few precious moments. There’s such a low supply of them, and a high demand. Note to self, no more hesitation. I go into her room and she is choking on mucus. I slap her on her back, attempting to dislodge the mucus. No dice. I try again, and again. “Is this how it’s going to happen. Will she pass away violently in my arms?” Finally, after several hour-long minutes, she inhales and I exhale. A symphony of relief.

That one was life or death, she says. Does it count as saving a life if the life is ending no matter what we do? I wonder that every time I stop her from choking. It’s like trying to keep the sand on the top half of an hourglass, or trying to catch leaking water in a colander. I’m Sisyphus, pushing the stone up the hill ultimately to have it roll down. She is Prometheus, bringing light to those who love her, and undergoing subsequent agony. At least, unlike Prometheus, the hourglass will give her a way out. I go back to sleep.

It’s 9 AM. There’s another knock. I go into Carla’s room. She is in her bed surrounded by loving friends. The room is filled with cut-outs of butterflies and hummingbirds, some on the wall, some hanging on the ceiling. When she speaks, it is almost inaudible, but I always know what she is saying. Beethoven is playing on the speakers in the room. She mouths words that nobody can decipher but me.

“What was that?” A friend inquires.

I smile. “She says Beethoven is a buzz kill. She wants to hear ‘No Rest For The Weary’ by the Blue Scholars.”

http://www.youtube.com/watch?v=JIqMIrmpUjc

She smiles. Hip-hop, poetry, people who love her, how could any place be better than this?

There’s no rest for the weary, just another day grinding up stones, until they turn into dust.

“I’m singing,” she says, as I hold her curdled, immobile hand. “I’m singing.” How poetic and meaningful can two words be? If she were to pass away at that moment, I think she would have no complaints.

I then play her a funny and cheery song that is, ironically enough, about prescription drugs. She takes 23 of them.

“I feel fantastic, and I’ve never felt as good as how I do, right now, except maybe when I think of how I felt that day when I felt the way that I do right now, right now.”

The irony doesn’t escape us. We should be crying, weeping. We’re listening to the happiest song in the world.

It’s noon, and I suggest that we watch the old Twilight Zone Episode, “Nothing in the Dark.” It opens with the timeless voice of Rod Serling.

“An old woman living in a nightmare, an old woman who has fought a thousand battles with death and always won. Now she's faced with a grim decision: Whether or not to open a door. And in some strange and frightening way, she knows that this seemingly ordinary door leads to the Twilight Zone.”

In the episode, a young Robert Redford plays a wounded police officer, who is helped by an old woman who is convinced that every man she meets is secretly “Mr. Death.” After Redford reveals that he, in fact, is Mr. Death, he says to her, “Take my hand, mom.” “When do we go,” the old woman implores Robert Redford. “We have already gone. Was that so bad? You were not torn asunder. What you thought was an explosion was a whisper. What you thought to be an end, a beginning.” She looks in the mirror and sees herself on the floor and no longer living. She smiles, and they walk arm-in-arm outside.

Nurses from hospice arrive. They are not the ordinary ones, but they are capable and confident. They tell Carla that another nurse said that the oxygen tank, which will be arriving soon, would help her “Go softly into the night.” Carla, characteristically, says “Tell him that he fucked up the quote, it’s ‘go softly into that good night.’” Everybody laughs

The nurse tells Carla that, if she and Carla never get to meet again, it was a true honor to meet her.

I love my mom. I want you all to know that she is probably quite close to going softly into that good night. It is heart-rending, but eventually the sand goes to the bottom of the hourglass.

Saturday, May 01, 2010

On Pine Crescent, between Thirty-Fifth and Thirty Fourth, a giant redwood fence covered the double lot down the street from us. The fence was so high we couldn’t see what kind of house lay within, but our imaginations ran wild. Lucky for me, there was a conveniently located knot in the wood and I used it as a peephole. Through the hole, I was able to see a magical bridge over a pond with real lily pads. The other kids told me if you snuck onto the property, you could catch real live tadpoles, but you had to bring your own plastic bag. The trees on the property were this thick canopy so only dappled sunlight could penetrate the firs and maples above. The ground was covered in ferns all of which seemed to love the shady magical space.

I always imagined what kind of people lived there. Some days, I imagined a crusty yet friendly groundskeeper. Other days, he was an evil man who would kidnap me were I to try to pilfer his precious tadpoles.

A little further down the road was Quilchena Park, where we would toboggan in the winter and where our upscale neighborhood’s version of “rumbles” would occur at dusk on a warm summer night. Further still were the train tracks where we would sit and wave to the conductor or put pennies on the tracks and see what happened to them.

Every memory of every little moment is so clear to me. I think that’s one of the blessings of being young. You’re so present to the gifts in front of you that every sense is awakened. I can still remember every smell, the sound of each individual bird, the feeling of the sun at different times of the day, and how it reflected off the grass or the snow or the sand. More and more I find myself back to one of those places. I sleep more than I’m awake and I take a ridiculous number of drugs so it’s not surprising that I’m doing a little time-traveling.

I used to sit under a tree in Quilchena Park and try to write a poem that would be worthy of the beauty around me, but I always failed... partly because I was still stuck on that whole rhyming thing.

The other night, my sheet had trapped my arms while I slept. I woke up and I needed to call my caregiver for help. It was then that I realized I no longer have the arm strength to move a single twin sized sheet. I was unable to ring my call bell and did not have the lung strength to yell for help. I was trapped in my own bed. In this kind of situation, one’s first instinct is to panic. Trust me, this does not help at all. I lay in the bed and this poem by Hafiz came to me.

Dropping Keys

The small man

Builds cages for everyone

He

Knows.

While the sage,

Who has to duck his head

When the moon is low,

Keeps dropping keys all night long

For the

Beautiful

Rowdy

Prisoners.

This poem made me realize that by calling my body a prison, I was that small man. I had to transform the metaphor of body as prison into something else. I imagined my body was a sandbag on a hot air balloon to be hoisted over the edge of the basket in order to gain altitude. I needed to release my body—my sandbag—to allow my imagination to soar.

I told this story at a couple of talks I gave and, apparently, it made an impression on a couple of my caregivers because one of them, Alexa, designed a hot air balloon tattoo and the other, Jenny, agreed along with Alexa to surprise me with matching arm ink. On the day they were supposed to show me their surprise, their tattoo artist flaked and when they came over, I had to tell them that I was no longer eating food and this obviously meant my life expectancy was considerably shorter than we had hoped. They decided not to wait to surprise me, and when they told me their plan, I said, “Aw Hell, what’s one more tattoo?” and agreed to go along with them. My former caregiver/pseudo-daughter, Jamie, flew in from New York just to get the tattoo with us (her first). Here are a few photos from that auspicious evening.

After reading about my tattoo, my brother wrote to me; “I was thinking about you getting a new tattoo and I saw that you had said Dad was considering getting one, too (I thought that part was an April Fool's gag). I briefly considered getting a tattoo myself and then realized that I am just not a tattoo person. I mean, I kept trying to picture some place on my body that I'd be okay having ink permanently injected into it, and I just couldn't find one. I don't have a problem with tattoos, it's just that we get along better from a distance.

But then I was thinking, well, if not a tattoo, what could I do instead that would be an acceptable alternative? I got an idea that I ran by Allison and she liked it. So, we are instituting a new rule in our family. We're going to call it the Auntie Carla rule and we're going to make sure the kids learn it well. The rule is this: At least once a year, you have to do something that you've always wanted to do, or go somewhere you've always wanted to go, or try something that you always wanted to try but scares you a little, or just do something outrageous and worry about the consequences later, or say yes to a ridiculous dare. Basically, it's about saying yes when you usually say no. I'm not so much into skin tattoos, but I think of this as a kind of tattoo of the soul”.Needless to say, this idea for a tribute makes me very happy-a gift that keeps on giving.

Last week, I had a visit from my friend Megan, who also has ALS. She’s Miss December 2010 in the ALS Calendar. It was great to see her, but a little sobering to watch her family dealing with her trache and new feeding tube. In that period, she was using my cough-assist machine, and it looked like she was in a lot of discomfort although she didn’t complain much. The next day, she was rushed to the hospital with double pneumonia (from which she is now recovering, thank goodness). Amidst their horrible family crisis, Megan got her mom to have 160 Gerber daisies delivered to my room. Shehad wanted my entire room to be filled with my favorite flower and she succeeded. I don’t really have words to talk about someone who would be thinking of other people and acting on those thoughts in a time of such great crisis, but from now on, when I think of Megan and her family, here is what I will see:

But let me describe my room pre-160 gerber daisies. My caregivers have strung bright-colored lights all around the room. They have wrapped ribbons around the bars of the hospital bed so you can’t tell how ugly it is. They have pasted butterflies and hummingbirds on the walls. Alexa has made terrariums for the window, and brought me a giant brass Om. They have hidden the medical equipment under tapestries and tablecloths. The colors are deep and rich and lively. And Kathy just bought me a fresh copy of my favorite novel, so everyone can be reading from the same book when they read to me. Obviously, my preference would be to get out and lead my normal life, but that is not the plan, so a magical world has been created right here.

Mac came to see me last weekend and I was telling him about a visit from another young person who has ALS. His name is Corey Reich and his ALS mercifully is progressing relatively slowly. Mac said to me, “It makes me sad to think that Corey will one day be in the kind of shape you are,” and I agreed and pondered aloud why a reasonably healthy, fantastic young guy like that would want to visit someone who is a) older than his mom and b) a harbinger of things to come and Mac says, “It seems like a weird thing to do, but don’t forget: you’re a cool dude.” You have no idea what it feels like to have your teenage son tell you “you’re a cool dude.” It may be one of the peak moments of my life.

In my conversations with Mac, my dad, and others, I’ve realized that there’s actually nothing for me to be upset about. Everything I fear and dread is going to happen in the future and it’s not happening now. Therefore, I’m doing what I call “pre-emptive worrying.” The reality is when all of the things that I dread come to pass, I won’t exist but my other loved ones will have to deal with their grief, loss, etc. I won’t be conscious and I will be blissfully ignorant of the wreckage left behind. So I could spend time worrying about things that aren’t happening right now, or I can enjoy and love the people in my world and accept that no one (not even me) is indispensable. Those I love can grieve without my help. I think that’s my thought of the week: suffering is dramatically reduced when one opts out of indulging in preemptive worry or grief.

The other thing I told Mac was that when people try to comfort him by saying, “She’s in a better place,” they are only half-full of shit. I mean, look around you. Listen to the birds. Watch the kids stumbling and taking their first steps. Hear one piece of the billions and billions of pieces of music that have been written. Watch the way the sun lands on a house or a tree. I defy you to think of a better place than this. I fucking love this place. It’s an awesome world and it never ceases to surprise me or make me laugh out loud. There can’t be a better place. On the other hand, from the point of view of my physical body, there is a better place. When choosing between “suffering” and “not-suffering,” I recommend all non-masochists choose “not-suffering.” When I die, I will be going to a better place because I won’t deal with the daily discomforts and indignities and yes, often, pain that this body has dealt with in the last couple of years.

I learned a lot from my experiences with ALS, as well as my experiences writing this blog. Almost everyone has a story of loss or longing and almost everyone desires a way to find meaning in our lives that whirl past us so quickly. Almost all of us count our loved ones as our most cherished commodity and yet, so many of us don’t have or make time to spend with them. We want to stop and smell the roses, we want to fully embody gratitude in our hearts and minds, we want to be the best ‘us’ we can be, and yet the road is beset with detours and roadblocks.

I will gradually fade in people’s memories, so that even my son or my dad will have to look at a video or a picture to remember what I looked like and what I sounded like. This blog, whether it becomes a book or not, will be relegated to the shelves of both minds and/or libraries. Nothing lasts forever. The formidable boulder becomes a grain of sand swept away into the sea.All we have is now. I’m going to keep making the most of my now. I’m going to try to avoid preemptive sadness and I’m going to urge people who read this to…

...Yeah, I couldn’t finish that last sentence without sounding like a pompous full-of-shit windbag. I’m just dying, I’m not fucking Nostradamus. In fact, I’m not fucking anyone, which is far more disconcerting than dying. Imagine knowing you won’t have sex for the rest of your life. Doesn’t that make you want to go jump your husband’s bones right now? Shut down the computer and do it. Or surprise him at work with a blowjob. Anyway, that’s the kind of advice I’m better at giving. Dying teaches you how to live, but it’s very site-specific. Everyone has to learn it their own way.

I don’t believe that to everything, there is a purpose. I don’t believe in a logical, just universe. I believe in randomness. Having said that, if me dying has been helpful to anyone or made anyone realize the depth of love they have for this world or for the people around them, then I’m pretty pleased about that. I’m also really stoked that I’ll be eternally good-looking. Personally, I was not looking forward to arthritis, jowls, cellulite, or the inability to recognize when I was wearing too much perfume.

I have decided that while Mac and others may continue to post, this will be my final post. I’ve said everything I want to say and everything comes to an end. ALS has been calling most of the shots, but not this one. I get to decide when this great experience called the blog is over and I call it. It’s over.

It’s been an honor to have people read and comment on this blog. Thank you for everything you have taught me and for all of the kind words that have lifted my spirits. News will continue through this blog, including specifics about my funeral, which I guarantee you will be the world’s most hilarious funeral ever conceived by man.

Wednesday, April 21, 2010

This is more or less a blog entry from Kris Cardall. She and her family went to Peru and brought "flat Carlita" taking pictures of her at several landmarks. Ironically, one of the things I always wanted to do was see the steps of Machu Picchu, but by the time I was thinking of Bucket Lists I couldn't climb stairs. Lucky for me Kris took "flat Carlita" on the adventure that "perfectly proportioned Carla" could never make. Here it is with Kris' commentary below:

Saturday, April 17, 2010

Hi Muselings, it's your best friend Mac, writing to give you an update on how Carla has been lately, since it has been a while since her last blog. If you are expecting razor-sharp wit, astute analyses of life and current events, or some deep spiritual crap, this is probably the wrong blog post to read. Just kidding, whenever I open my mouth, or keyboard, as the case may be, it is deep, witty, and razor-astute (yeah, I just made up a compound word. Deal with it).

The first, and most important thing you need to know about Carla's current physical state, is that the 'S' key on her keyboard is out of commission. Now, it was one thing when she lost her ability to walk, and another thing when she lost her ability to croon like so many songbirds, but imagine losing your ability to pluralize! I am typing on said keyboard, and it makes me feel like my mirror motor neurons are firing. Anybody who both reads Daniel Goleman and ALS literature will get a minor chuckle out of that sentence.

In seriousness, Carla isn't doing all that well. She is no longer really capable of eating, and has made the decision not to get a feeding tube either (note that even if you were to convince her otherwise, it is too late, so save your well-crafted arguments for your next pinochle dispute). Additionally, she is rarely able to get out of bed, though she was able to do so for her father's surprise birthday party yesterday. For possibly the last time, at my urging, Carla wailed on a piñata like there was no tomorrow. Not that she didn't have evidence that there was a chance of there being no tomorrow.....Perhaps the most amusing part of her frail attempts to hold the bat between her legs while swiveling the chair left and right, besides the fact that she still did a better job than Kathy Sprague, was that her lovely caretaker Mayra, who was holding the string to which the piñata was fastened, has never heard of the "handicap for the handicapped" unspoken rule in athletic endeavors, and moved the piñata up and down like she would for a healthy person. I, of course, dominated the piñata game, but I won't write about it, not because it isn't enthralling, but because I'm sure that you each have a mental image of me swinging a bat at a piñata that I don't want to ruin, because I probably didn't have quite as sosa-esque a performance as your projection of me had.

While there is no way to know with ALS, Carla is certainly in the last stage of her life. She is not in a great deal of pain, due to the 21 drugs she takes (most of them prescribed...), specifically the methadone, which she says is like having a layer of cellophane between her brain and her consciousness. Which is something that she would never say, she points out, were it not for the bevy of drugs she takes. She additionally planned a surprise party that she forgot she planned, and sang frosty the snowman with no remembrance of doing so. Do not despair, however (well, okay, you can despair a bit, but not about this!) as these effects are solely due to twenty-first century pharmaceuticals, and not Amyotrophic Lateral Sclerosis.

The basic bottom line, all Macky charm aside, is that, since she can't eat, how long she lives will be determined by how long she can keep swallowing. She hopes to continue swallowing until at least the summer, but certain medical professionals indicate that such a hope may not necessarily be met. She spends most of her time in bed now, and it is, as you can imagine, a very difficult time for her and those who love her.

Send your thoughts her way, and I'll keep you updated. Just because I'm writing this update, however, does not rule out future blog posts from her. She is working on a blog post currently, but she is doing it by herself, so it takes a long time.

Tuesday, April 13, 2010

I myself am not much of a "prayer" but if you are would you please save room in your prayers for my friend Megan Mishork. She is a feisty, wonderful 25 year old with ALS who is now in ICU battling double pneumonia. Trust me pneumonia and ALS are a very dangerous combination so she needs all our good energy. Thank you.

ALS Calendar

About Me

I used to be a solo performer, singer, writer, director, actor and college teacher. Now I have ALS so all that's left is writing. I'm curious. I have an amazing son named Mac who is 16 and wise beyond MY years and who tells me I'm good looking for someone who is dying and old which is worse than saying nothing but i still love it. I am playful and I love life more than I can express.